Month: September 2008

09.30.08 fashion

I’ve been reading fashion magazines (as one does when the world economy crumbles) and I am baffled once again by the forecast that “pale white skin and bright red lips” constitute a major trend for the autumn/winter season.

It is a look I’ve been fronting for well over a decade, in several different countries and the most fashion forward communities, without meeting more than maybe five other people who also ascribe.

This particular trend prognostication happens about every eighteen months, with no discernible impact on street culture. It just doesn’t work for a lot of skin types, and anyway, the hassle factor is quite extreme.

Who would bother? Only the most obsessive, and you know what? We aren’t doing it because some random magazine dictated the choice.

In a similar vein, the menswear guides are pushing posh.

Now, I live in the most rarefied of all the British cities, and often hang out with landed gentry. For real. Still, I know precisely one person who routinely wears three piece suits with all the accoutrements: my son.

In fact, he finds it disturbing that his school uniform consists of a casual jumper and slacks. He hurries home to change into more civilized garments. Like a waistcoat and bow-tie.

Of course he started dressing like this when he was eighteen months old, for his own idiosyncratic and compulsive reasons. I doubt it is a style that could be acquired otherwise.

The main point though is that we are not fashionable. We’re just freaks.


9.27.08 conceivably

I just got back from an obscure town in Germany where I was visiting a famous institute you have never heard of.

Much fanfare attended this trip because they’re trying to recruit my husband to be a director, and therefore must convince me that I want to move somewhere excessively obscure.

For instance, Andrey arranged a bike rental so I could attempt to find Gulliver Welt (and he waved vaguely in the direction I should cycle).  One of the professors invited us to dinner.

This was genuinely the extent of the efforts to persuade me; the reasons are opaque but the general impression is that I am supposed to be in awe of the prestige surrounding the institute. Furthermore, I am supposed to so supportive of aforesaid husband I am willing to move to the middle of nowhere, give up my career (because my immigration status would not allow me to earn money, though I could “always volunteer”), and accept that as a spouse I only qualify for a visa renewed every year — whereas my husband, as a director, would have permanent residency.

Other fun facts: while my husband would have guaranteed private health insurance (the best in the world) that benefit does not cover spouses. Upon further review, the institute suggested that I could make do with the public system, although accessing it would mean getting a job, which is (review previous paragraph) technically not viable for someone with the type of sponsored visa I would have.  Or a foreigner with pre-existing conditions, regardless.

Hey, guess what? I smell a “not consistent with EU immigration law” kind of thing here. Though as an American, I’m not protected by EU regulations. The larger problem is that there are no jobs in my sector in the region. The institute has a solution though! Someone suggested they could create a job for me. I could be…. long pause… something…. what is it I do again? Oh right. There are no jobs in my sector in the region. Back to the “support your husband, sacrifice your entire career and everything you care about, because he is an important man who has been offered a very prestigious job.”

All of which is unacceptable but amusing. The best part though? The institute seems puzzled that I would even enquire about a visa for my high school age child.

Hmm. Guess we’ll see if I take that deal, huh?

I am however a fair person so I didn’t want to say no without due diligence. Just about the only thing that could convince me to move is improvement in the quality of housing, so I requested the department arrange some viewings.

One included a top floor maisonette with a few of the river, the hills, and vineyards stretching all the way to France. When I arrived the tenant, a stranger, looked puzzled and said Have we met?

I replied no, on the principle that her scientific career does not intersect with my life in any way. We have nothing obvious in common, and no known mutual acquaintances. It was unlikely we had met in ye olden times, as there was no discernible overlap with my education or west coast life. She does not connect with my Cambridge existence, and definitely didn’t seem like someone who subscribes to my magazine (an assessment based mostly on the fact that she does not have children, but still, a safe bet).

At some point she mentioned doing her postdoc in Montreal, then frowned and said I think your name came up?

I shrugged but then she was describing the apartment she subletted and I said From Rachel?!

Why yes – indeed – this random person who could not conceivably know me otherwise did in fact rent an apartment in Canada from one of my best Cambridge pals.

These coincidences still creep me out no matter how often they happen. Also: Gulliver Welt was closed.


9.23.08 words

Recently I went out to lunch with David. We were chatting about his move from Cambridge to Sacramento and the culture shock (and seasonal allergy risk) of going back home.

I described a few of the places I might move next, holding up two hands to mime weighing the options, and asked Which one seems more me?

He laughed and said I don’t think you will ever fit in anywhere, Bee!

This is a valid observation.

There are certainly cities that offer a closer match to my extracurricular interests, other places where I enjoy the company of good friends, still others where the landscape offers consolation.

Yet, despite the affection I feel for those places, I live here on purpose.

When I make a major life choice it is always perilous and precipitous. I am sure that I will leave Cambridge the same way I arrived – all in a dash without a forwarding address – though I have no way of knowing when that will happen.

Yesterday I ran into David again near the much hyped and very odd Corpus Christi clock and he wondered if I would have time to hang out again before he leaves for the states.

The answer on reflection was no – I have film and play tickets, plus a million chores to finish before racing off to Germany before dawn tomorrow.

Walking around this ancient city after we talked I felt awful, certainly worse than turning down the invitation warranted. He will come back, and I will visit his family in California. Our friendship will continue.

Poking around in my brain I realized that while I was upset over the lack of time to accomplish everything this week, I was also deeply sad about other news.

My grandmother’s health has now deteriorated to the extent she no longer recognizes anyone except my father, based on the visual cue of his bright red hair. Another family member is struggling to recover from heart surgery. One of the only grown-ups to show any degree of compassion when I was a sick kid has just entered hospice, her fight against cancer nearly at an end.

I am intrinsically and historically rubbish at much of the work of being a daughter, niece, cousin, friend. Even my offspring will confirm that I am a strange automaton, puzzled by many elements of life that other people find easy. I don’t talk on the phone, I rarely answer email, I have walked away from every community that I call home.

The only things I can reliably offer are organizational: I am a master planner, the queen of the deadline. I am also exceptionally calm in a crisis. I’m the person who makes the trip to the emergency room, the one faithfully standing guard in the hospital ward, the individual who can make funeral arrangements and scare up the money to pay while everyone else dissolves in grief.

I was raised to believe that true love is expressed with direct action, and everything that has happened in my adult life has supported the concept. Words are just words, no matter how nicely stated.

Right now it is not possible to fly back to the states no matter how much I want to go.

I did not move here for selfish reasons, but knowing that is worse than useless when people I care about are in pain and I can’t go home to help.

Yesterday I bought cards and sat in the market square crying and writing letters to people I may never see again.


9.19.08 radiation

My appointment with the breast cancer clinic finally came through — fourteen months after the initial referral.

Of course, the appointment falls on one of the precisely two days I will be out of the country this year.

Oh, and did I mention that various issues (like exceeding my lifetime safe limit of radiation before my thirteenth birthday – you know, small details) contraindicate having a mammogram? If I need testing, they will most likely do an MRI.

What fun.


9.17.08 thoughts

Remember a couple of years ago when my son’s beloved grandfather went in for routine surgery, and everything went completely wrong, and he ended up in a coma for a month?

Apparently he had a heart attack, though the damage was only just diagnosed. He has recently progressed rapidly toward congestive heart failure.

Today he goes back in for a triple bypass.

This is a man who devoted his entire professional life to tending the most vulnerable people – children unable to live in foster care due to extreme abuse or illness. He is respected and admired for his devotion to saving and rebuilding young lives, and he is one of the sweetest people you could ever meet.

I hope that the surgery goes well and he recovers quickly.



9.12.08 force

Forget all the news distracting grown-ups lately – my kid is very worried about what some mad scientists have been up to.

My reply? They’re Swiss, they won’t blow up the world, they couldn’t make any money on it!!

This did not prove comforting.

I do not know Stephen Hawking personally (though he nearly ran me over one night as he raced from the Fort St. George to Midsummer House) but luckily I do know many other Cambridge trained physicists.

I wrote and asked Paul for a synposis to soothe my worried son. After explaining the experiment (which you all understand, right?) this was his answer:

They’re hoping to find something called the Higgs boson – the ‘God’ particle that supposedly pervades the universe and gives matter the property of mass. Personally, I think they’re barking up the wrong tree with that one – it sounds rather like phlogiston and the aether theory of the 19th century. I don’t think there need be anything that gives particles the property of mass, as I don’t think it can be separated from the fact that the presence of matter in space-time distorts it, thus creating the necessary reconstruction of the universe itself that registers the presence of matter. This explains gravity quite easily, and I thought Einstein had it right in this sense. Physicists have failed to unify gravity with the three other forces in the universe and I think the reason is that it’s not a force.

So, to conclude, I think it’s very unlikely that the machines will produce anything untoward, and potentially even anything all that interesting. If the latter is the case, then they’ll build a far bigger one, of course, and the debate will reopen, although I would venture the same opinions again.

Now you know.


9.11.08 mystery

I am notorious amongst friends and family for blithe indifference to certain kinds of danger, particularly the sort that threatens my health.

Sure, I’ll stop drinking coffee if it hurts my tummy, give up sugar when it causes a rash, buy organic and local when doing so seems prudent. I’ve never smoked or used recreational drugs, I ride a bicycle everywhere – I could be the poster child for clean living.

But I have lived with chronic pain and incapacitating illness so long I regard both with benign indifference. There isn’t much that could surprise me, and I really can’t be bothered to have any emotions about the whole thing.

The recent session with the geneticist did not strike me as particularly illuminating, mainly because I did not want to think about what happened at the end of the appointment.

We had already discussed the assorted referrals (including sending my kid off to visit the cardiologists) and I was vaguely looking around, preparing to depart.

The expert on familial cancer leaned back in her chair and informed me that when she reviewed the chart she would have thought I had an entirely different genetic disorder.

Except, she went on, the presentation of skin cancer absolutely confirms the diagnosis. The trouble, the mystery, is how or why I simultaneously also had a virulent primary and unrelated cancer, since nobody else with the genetic disorder has ever presented with those symptoms in combination.

Especially not at age twelve, and more precisely, not in the accelerated and bizarre manner my disease announced itself.

The geneticist went on to say it would just be rotten luck to have two dominant disorders. On top of the sundry minor traits transmitted down the family lines.

True, though as I responded, I’m already deeply unlucky, with the DNA profile of a cesspit.

This might be a philosophical question, but which is better – to know and name the trouble, or to remain mired in mystery?

I gave up asking why why why approximately twenty years ago, and while I blinked in astonishment over the suggestion of an additional diagnosis, failed to even take note of what it is called.

Instead I asked How would my treatment change if I had this too?

She said that they would do frequent thyroid monitoring, but I’ve already had that organ hacked out. She went on that they would test for cancers of the reproductive system, but I’m well stuck in that routine based on symptoms.

Nothing else would differ, except I would have yet another pre-existing conditions mark against me in the great cosmic quest for health insurance.

Hurray for me.


9.10.08 conflagration

Summer never truly arrived this year, and autumn is already here, with conkers falling off the trees, torrential rain, muddy fields, cold dark mornings.

My day does not properly start until I have lit the fire.

In the past, this was a protracted and messy ordeal that left me coughing, frustrated, and redolent of smoke, with very little warmth to show for it.

But over the course of last winter I discovered the most fantastic solution, courtesy of Andy at Midsummer Energy: eco-logs.

What are they? Essentially, tubes of compressed sawdust that you can break down to any size you need.

They arrive in 15kg bags that inform me the contents are recycled pure wood waste, C02 neutral, and produce low flue gas (which is apparently better for the chimney).

The description claims they are easy to light, and though I was skeptical this has proved accurate. I turn on a seven minute song and by the end of the lovely tune I have a roaring conflagration that will, with tending, keep me toasty all through the day and night.

Of course I am still not quite awake at that point, and spend another hour or so stumbling around unable to focus; but at least I am not shivering while doing so!

Best of all, if I can’t face the long cold slog down to pick up more, the nice bike messengers at Outspoken Delivery will cheerfully deliver for a very small surcharge.

Life on the river is in fact sweet.


9.8.08 emphasis

During the school holiday I took my kid to Audley End, where I was bemused by the accumulation and display of centuries of private wealth, and he had fun playing Victorian games on the lawn.

If they call it a lawn here.

Walking back from the train station I absent-mindedly glanced in the window of a house and noticed a Trader Joe’s shopping bag: a common object back home but absolutely unheard of here. The sight made me clap my hands together and squeal (yes, I really do act like that) until I realized I was being both a voyeur and foolish.

Just then a face popped up behind the bag – it was Karen holding her gorgeous daughter.

The fact I had no idea she lived there underscores a few interesting truths about life in this town, not least the hunch that I have not worked hard enough to sustain local friendships.

Karen graciously invited us in and fed us dinner, during which we had many fantastically entertaining conversations and my son (who used to hiss at babies) sweetly entertained a lively toddler.

I was especially intrigued to hear that, even though Karen certainly likes the town more than I do, she also misses the west coast in approximately the same way. Not just the landscape, or family, but the collaborative and community based nature of the arts scene.

Cambridge offers many advantages I have never experienced elsewhere, but there is literally no discernible underground. Artists, yes. Intellectuals, yes. Musicians, definitely – so many highly trained and brilliant musicians you stumble over them all the livelong day. We don’t just have buskers, we have opera singers on every other corner.

But the emphasis is very much on the cultural elite – the competitive and refined, whether mainstream or esoteric, is always always inherently part of the system.

This town is literally the definition of Establishment.

I’m sure it was different in earlier eras – I have read enough to grasp the incendiary nature of intellectual discourse here at various points. Though those times tended to coincide with a lack of en suite plumbing.

Now the town is too expensive and too transitory. This place is not like certain U.S. college towns where the waiter at the cafe has a PhD in chemistry, or your friendly bike messenger is a trained medievalist.

This is not a criticism. Karen agreed with me that the west coast can feel claustrophobic, overly idealistic, too personally demanding, often anti-intellectual. Exactly the opposite of Cambridge.

When I decided to move here I craved solitude above all else, and that is something I certainly did find.


9.5.08 best

I’ve been working flat out all morning, hair yanked up and sitting askew in a knot, glasses on crooked, dressed in ratty yoga pants and hardly anything else, writing about my favorite topics under a (self-imposed but nevertheless urgent) deadline. The best sort of day!

When I noted physical demands like “eat food” and “drink fluids” I shuffled into some clothes and went to Bacchanalia to buy water. Oh, and just in case anyone wondered, the water in the tank on my boat is not potable. I have to buy, even when I refrain from imbibing bubbles – and yes, I will in fact cycle half way across the city to buy from an independent shop.

It was only 11 AM so the girl at the counter squinted at me and asked So do you have the day off then?

I looked up, down, around, pondered the truthful answer, remembered that I am having lunch with David in an hour which counts as “leisure” and mumbled Erm, ah, sort of, eh, no.

Why, oh why can’t I answer the question, given that writing and publishing have constituted my day job for well over a decade now? I have no idea, but the week in news has made me pine for, and simultaneously rejoice leaving, the United States. Like you wouldn’t believe.


9.3.08 pithy

I am a working class person who survived childhood cancer to become a mother in my teens – and then defied all expectations to raise my family out of poverty.

When I grew up I became a scholar of politics and policy, then worked in government – including the office of a controversial western Governor – and have devoted my entire adult life to service.

My work has been recognized with awards, accolades, media attention, and financial remuneration.

I represent the ultimate bootstrap success story. The American Dream.

Oh, except I had to move to a different country because I have a rare genetic disorder that prevents me from acquiring health insurance at any price.

I have been following the news from home with an eye to writing about the election, but after watching the crackdown over the protests at both conventions and the officially approved speeches inside the various buildings, know what?

I just want to vomit.

I have nothing pithy to say.


9.2.08 welcome

The genetecist drew up a family tree and we both stared calmly at the results – entire branches marked off with a hatch, meaning: dead.

If most of your blood kin are gone, it is very hard to establish the veracity of a DNA claim.

I grieve for them in the extravagant, quiet way they would appreciate, but no matter how much I care, they will never come back.

My uncle Rodger was a world-class wit and only about fifteen years older than me. To a large extent our childhoods overlapped, and he was certainly the most playful of his set of siblings. Every year at Christmas we wore matching Santa hats.

When I evolved into a teenager with broken down cars he was the one who always rescued me – and my friends – with grace and good humor.

He died too young, before his own son came of age.

This morning when I checked my email there was a message and a photograph from the states announcing the arrival of a new little cousin.

Welcome to the world, Neven. Your grandfather would be tremendously, lavishly proud, and the rest of us are all so pleased to meet you!


9.1.08 corollary

Last summer I went to the GP with a few health concerns. She did a brief exam, heard the phrase “rare genetic disorder” and promptly wrote a referral to send me along to the breast clinic at the teaching hospital.

When the referral went through, that clinic noted the diagnosis of a “rare genetic disorder” and redirected me to Medical Genetics without first extending the courtesy of an exam, let alone a conversation.

I wrote a letter disputing the assessment, since I wanted to be seen by a breast cancer expert for a routine check. I’m fully aware of the risks and symptoms associated with my primary diagnosis, and checking in with my geneticist pals would not be illuminating given that I had symptoms rather than questions.

My main concern, which proved true, was that routing through Medical Genetics would extend the whole diagnostic process a dangerously long time. If the actual symptoms had been evaluated, I could have been in and out within weeks.

Instead, thirteen months elapsed before I was allocated an appointment with the genetics clinic.

Within three minutes the geneticist, baffled, pointed out that I should have been seen in the breast clinic. When I explained the efforts I had made to go there first she shook her head and promised to sort it out.

There is a a great deal of legitimate controversy about breast cancer screening, and I am considered too young for mammography in this country. Beyond that, I have already exceeded the safe lifetime dosage of radiation, so it isn’t like I am begging for more exposure to something that could kill me in the long run.

I just wanted to have a properly trained specialist look at my body, evaluate the concerns, and advise on an appropriate protocol for future checks. My GP is simply not qualified, but more importantly, not interested. If I will be routinely kicked to speciality clinics for average care, all that I ask is to be sent to the right place.

Having said all that, I remain astonished by the professionalism, compassion, and quality of care once I actually get the appointments.

The principle of rationing is effective and smart. I like knowing that, even if the system is slow, it does move along… and everyone gets the same access to services.

I doubt that my symptoms will result in yet another cancer diagnosis, partly because I have a superstitious belief that it would be unfair. I have already had more than my share.

But if I am wrong, will this one be the one that gets me? Something will, inevitably – I am not long for the world, not just because of the genetic disorder but also because of the treatments that have kept me ticking so far.

The larger point is: if I am diagnosed, what then? I have no support, no network or community or anything at all in the UK aside from a few friends busy with their own lives, and the children I produced – one too young and sensitive to cope, the other too old and adventurous to be constrained.

If I were still in the NW (or SF, or NYC) this would be different, and I would know that a huge group of people would swoop in to help.

In all of those places this would also be the corollary: I would not have appropriate health insurance, access to the best doctors, enough money to take the edge off the rest.

Life is a series of compromises and this is why I live in Europe – I believe, emphatically, in paying whatever is necessary to build a durable system of health care that benefits everyone. Not for selfish reasons but rather because I fundamentally understand what if feels like to go without.

The fact that I have abdicated everything else my heart desires is entirely beside the point.